MS Python/Hell Hug, (MS Hug)

[Suebee]

Funny, I thought and still not convinced that my liver or other organ isn't pushing my abdomen up into my ribs!
I've been to so called best PT and neuros and spinal neuro. No one has diagnosed my pain and pressure as a result of spasticity or hug. But I didn't push them to do it. I find advocating strongly sometimes backfires and I'm a little demoralized by it. I think that drs are ok with deciding certain symptoms are unexplained and could or could not be caused by MS. The problem with this obviously is that without a specific accurate diagnosis for the "hug" it is less likely one is going to have it managed it well.

Yes, my hug is debilitating in several ways - severe hug makes me recline or sit reclined or get on floor. I consciously need to not let the sensation panic me while I do my daily tasks. I get fatigued in core and sometimes need to stop everything and rest my core (kinda like Dave's kayak story) and this can be awkward and hard for those around me to understand that when I was walking (or kayaking) fine just a min ago.

I also have self diagnosed myself with lordosis, a curvature of the lower spine that can occur when someone has a muscular weakness from CNS damage. I am not old per se but lost 2 full inches in height since my significant attack 10 years ago. I have a baseball size deep curve in my spine at its base. A symptom of lordosis is weak and painful hips because the odd rotation of the hips with curve. It does not appear that lordosis is studied in mobile MS patients but instead the paralyzed, stroke victim, or cerebral palsy. Spinal orthos who specialize in scoliosis (curvature of the spine) treat children (who are growing and the spine can be guided) and bed bound or severely disabled adults that require spinal fusion/surgery. I have not been successful in finding the right medical person to help me. I just want targeted exercises to strengthen the specific muscles that support the spine and core, and a girdle or brace of some sort to prevent further curve. I currently use a fashion highly reinforced girdle on some days and it provides much needed support.
Sorry, I might have got a bit off topic, but in my mind my back and hug issues are related - caused by weak muscles and misfiring neurons.
Any suggestions welcome....

[Rob]

I know I cannot do my running, or anything else without something. Oct 15’ My wife and I switched insurance to an HMO. Had to change Dr.’s & pharmacies too! November comes and I’m low on Lyrica, HMO wouldn’t approve, & I don’t see new Neuo till December. I ran out, (I did titrate down some before.) I was so miserable. Basically, home bound for a few weeks. Family Dr. prescribed a starting dose of Neurontin. That was just enough to keep me from hating to be alive.
Once I got to the neuro he said I’ll give you a real dose of Neurontin. I went through hell for several months. I eventually maxed out on Neurontin & didn’t feel as good as when I was on Lyrica. I tried to get Lyrica again, insurance denied. I wrote them a letter and they approved. It was a rough time switching back.
I’m back on Lyrica and maxed out. I still didn’t think I feel as good as when I was first on this. Did I progress, is it not as effective, I don’t know.
Paul, when I first started looking at yoga, I got the free MS yoga DVD, one of the drug companies made, it sucked. Had me huffing and puffing. Then a fellow MSer gave me a yoga for senior’s DVD. It was actually pretty good. They had three people, doing three different levels of the poses. That might be an idea for you to get started. I’m very lucky that I have a great yoga instructor. She actually made a class for us, MS/Chair yoga. Now we’ve opened it up to anyone. Been going three years now.

[Rob]

Suebee, I didn’t see you had posted before my last post. I can certainly relate to your description of how the hug is debilitating. I have a hard time standing up straight when it’s bad. I will come in the house, from the shed, and walk bent over at the waist. I’ll stop, force my body upright, then bend over backwards to stretch my abdomen, then try to continue. As I walk the rest of the way my body goes right back forward.
I think the Hug and weak back muscles go together too. Like Dave’s kayak story, the core is just weak. I’d like to know why.

[Suebee]

Lordosis (over cure of lower spine due to weak muscles) specific exercises

here is a link to healthline's suggested exercises for lordosis. There are 5 exercises and they are glibly described. Some may be more advanced than your body allows. They are similar to ones I was prescribed at PT, but I have not strengthened. I post because I thought you all might be interested to know how the core, back, and hip muscles are inter-related for strengthening.
http://www.healthline.com/health/fit...is-exercises#2

The take away--"Lordosis is often due to an imbalance between the muscles surrounding the pelvic bones. Weak muscles used to lift the leg forward (hip flexors) combined with tight muscles used to arch the back (back extensors), can cause an increased pelvic tilt, limiting movement of the lower back.

One case study found that strengthening the glutes, hamstrings, and abdominal muscles can assist in pulling the pelvis into proper alignment, improving lordosis. This can help decrease pain, increase function, and improve ability to do everyday activities with ease."

[Rob]

Thanks. How debilitating was the Hug for you?

[Rob]

I finished a six-week set of weekly acupuncture treatments. No help for the hug. I thought the fatigue was maybe getting better until my Tizanidine went up. So, no telling right now until the dose changes, (my Neuro has scheduled), level out. Then maybe try again.
Yesterday I had an apt w/ a PM&R Dr. that specializes in MSer’s, @ U of M. I was so geeked about this as my MS specialist said this is The Guy. Basically he told me I’m SOL. “You’re already doing the exercises and taking the drugs that I try to get other patients to do. With spasticity, it is constant, and everything you do to help will be temporary”.
I told him, I had reading about people getting Botox in the intercostals and he had heard of this too! Although w/ out a protocol they wouldn’t know how. He is to search for information on this and get back to me in two weeks, or I am to call. IF they find it the next thing would be to get Ins. to pay for this. I’m not holding my breath on either one.
The only other thing he suggested was MMJ. Ya’ll told me but, still I resist. I’m thinking about considering this! LOL
I really need to hear from everyone, HOW debilitating the Hug was before mmj. Please.

[Rob]

Yes, that is interesting. I've never heard of the med's contributing to the pain they are supposed to help. Thanks, Susannah.

[Suebee]

I had similar experience with anti-spastic drugs and I decided it wasn't rt for me.
For me, there seemed to be rebound effect sometime after the half life for the drug. I would get more severe cramps as my drugs wore off. It was a catch 22. and very disappointing. There are earlier threads on this forum of people describing the supplements they have found helpful for spasticy.

Gary and others considering MMJ who require employment. I think it is criminal that anyone has to choose between pain and a federal law but I'm sure you are all aware there are significant legal risks by using MMJ. The last administration turned a blind eye so to speak and chose not prosecute, but with the proliferation of legalized commercial outlets in some states, and the new administration's current stance, it should really give everyone pause. Here in TX it was just announced that the agency in charge of regulating teachers sought to suspend or terminate a TX teacher who had ingested marijuana in Colorado. The administrative judge determined it wasn't warranted (after many years and lots of attorney fees), however, this is not the end of the issue, it will surely be appealed or come up in different matters. Also, even in states with legal pot, private companies could make an argument that they are following federal law and if their employee uses MMJ, they are gone.

https://www.nytimes.com/2017/01/23/u...rado.html?_r=0

Be careful. Advocate for changes.

[Rob]

Last month I was ramped up to 6mg Zanaflex 3x/day. As it went up I didn't see any benefit. When I hit the full dose my pain increased immediately. I'm back off it now, thanks in part to this tread. I'd have never thought the pain was from the med, if it were not for you guys, Thanks.

[Rob]

I’ve read about the MMJ program here in Michigan. I was told about this site, www.leafly.com and have been learning. Any other suggestions on where to find information?

[Rob]

So fast forward from my Jan 26th post. Botox – Well the PM&R Dr. found some papers, submitted to my insurance company, who quickly denied the treatment. I’m currently appealing & my MS specialist wrote a letter in support of the appeal however, still not holding my breath. The ONLY other idea the MS Dr.’s from U of M's MS Center had was to write an order for a TENS unit, to try to fake out the nerves. I’m currently waiting on that.
So, I’m coming over to the green side. I submitted my paperwork this week to get a MMJ card.

[Sparky10]

Just read this thread with interest, but have nothing to offer as I do not have this terrible hug. Nothing to offer till Rob asked about other places to learn about medical mj. Only place I've ever heard of to learn from is NORML. For Rob, specifically for Michigan: http://norml.org/legal/item/michigan-medical-marijuana. MS is not listed as a qualifying condition but chronic pain is.

I'm so sorry you folks are dealing with such an awful symptom.

[Rob]

Sparky10 thanks for the info. This has been helpful.
Update: Will wonders never cease. The insurance company has approved the Botox injections! I go the end of this month.
I'll update you all on the TENS, Botox, & MMJ, (I'll do one thing at a time). Maybe May will be my month. This has been a long time coming. I'm optimistic, scared, excited. One or a combo of these three is going to help, or not however, I going to find out over the next couple months.

[Suebee]

Rob, that's great your insurer came around about botox. I hope it helps you!